Cheryl DeDecker from Springbrook did call us and she basically told us that Jonah would not be able to enter their current program because of the level of his aggression (the kids share rooms and he could hurt his roommate) but that they think he’d be a perfect match for the new residences they are building, where every child has his/her bedroom. The problem is, the new buildings are evidently earmarked to get NYS kids attending out-of-state programs back into NYS.
She wants to advocate to place Jonah in one of the new buildings under construction right now, and I told her I would help her do so, but there’s no guarantee we’ll be able to get him in – and if we did it would be October or November at the very earliest. I don’t know if we can make it until then.
On Thursday, April 7th, this is (in part) the note Wildwood sent home in his log book: Jonah had a tough day today. He’s had 5 aggressions – 3 being of very high intensity. We had difficulty getting him in and out of the safe room because he wouldn’t stop aggressing. We had to hold him in the safe room until he was calm enough to leave.
Next day: Jonah’s had 6 aggressions today – some more intense than others…
Meanwhile he’s already been accepted at Tradewinds and we liked it there too; they will likely have a spot sooner and their kids all have their own rooms. Andy and I don’t know what to do. We don’t want to risk losing the Tradewinds spot by holding out for Springbrook, which may or may not take him at all. Not that we know when there will be an opening at Tradewinds, because we don’t…but it’s a bird in the hand.
Andy says he’s doing okay emotionally – my cousin D came and helped him this weekend while I was working at our yearly convention in Saratoga. They shaved his head because it was getting so long, and I came over Sunday to help for a while; Andy was just getting him out of the car and Jonah was limping awful – so pronounced it brought tears to my eyes, and I must have cried for 4 hours over our whole situation and probably exhaustion from the weekend mixed in. Jonah’s been limping but it’s getting worse, and there are no pediatric rheumatologists in our area. We have to figure something out though, because it’s obvious something is really wrong with his leg – every morning he limps now, Andy tells me. Andy is holding everything together while I fall apart, weeping and worrying. Paarents of these kids are not supposed to be so weak. It’s simply not allowed.
And yet I’m the weak one in a sea of strength.
That’s going to have to be part one of two, because I’m out of time to type…I’ll leave you today with some new pictures of Jonah Russell:
The Never Normal 
Amy, I am so sorry about Springbrook’s inability to admit Jonah now. Your title of today’s blog says it all–Tradewinds is the proverbial “bird-in-the-hand.” It has a highly trained staff, an excellent reputation, the private room Jonah requires. As you say in your post, if you and Andy turn down the Tradewinds opening, there is no guarantee that Springbrook will have room for him in October or November when the new residences are completed. And no matter how well Andy is doing emotionally, October/November requires another six or seven months of his constant carrying of Jonah, kicking and screaming, to time-outs, etc. Jonah’s needs are obviously beyond what the caring staff at the Wildwood day school can meet. As his pediatrician said, Jonah needs the structure of a residential program. Do you personally know parents of children who attend Tradewinds? Parents who can give you first-hand reports of their children’s experience there? My love is with you and Andy as you make this wrenching decision for your little boy.
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Amy…don’t you dare belittle yourself…you are one of the strongest women I know! I know you are searching for answers and for emotional stability, and I truly believe everything happens in a time and way in which it is intended.
But please gain strength from knowing that there are tens of people…possibly hundreds of people who are praying for you and keeping you in their hearts.
You hang in there. There is a plan for Jonah…of that I am sure…
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Amy and Andy, you are both amazing people and I believe you will make the right decisions for Jonah as you have all along. Amy, you have lots of people praying for you guys and sending you positive energy. Most of all, you have Andy’s strength to help get you through and he has yours as well. We all have our times where we need others to be strong for us but I have no doubt you are the strong one when circumstances dictate that you be so. You are blessed to have Andy and so is Jonah. We all need to weep and worry and let our true feelings out so don’t hold them in b/c it will only make things harder. But you have a deep inner strength and that has been shown many times throughout these years. God bless you all and I am praying for you while you and Andy make this very hard decision for your precious Jonah.
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I have been working on this poem… it seemed like it might be timely to share:
sometimes it’s right to have a good cry…
it washes you
it lets some of the brittleness fall away
it is rain
it reminds you of your tender side
that it is still there
beneath the strength of survival mode
and though sometimes it is scary
to cry
because you wonder that you might never stop
if you give in and begin
it is better to be tender
it is braver
to not always be strong
and it is human
to hurt
and to worry
and wonder
and wish
sometimes it’s right to have a good cry…
it washes you
it lets some of the brittleness fall away
it is rain
it reminds you of your tender side
that it is still there
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A heartfelt and oh-so-true poem; thank you for sharing it. The crying IS rain, allowing for growth and tenderness.
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This poem is beautiful. We women need to give ourselves the time…the permission…the right to cry and cry until we can think clearly again through our tears.
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Yes…
and we need to realize that our membership in the esteemed group – “enormously resilient, strong, amazing parents of children with autism…” will not be revoked…
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